December 23, 1991 – an entry from my journals.
I went (to church) even though I was still sick, because I wanted to see my kids in the Christmas Program. And what I saw was a little upsetting. Instead of just enjoying my kids, I find myself constantly evaluating them – especially in comparison to other kids.
Mary was up there, she didn’t even try to sing the songs (of course she’s been gone and missed the practices). In addition to that she picked her nose. Isn’t that attractive? Will had his finger up his nose half the time, too.
But Will did not sing the songs. He kept pointing to the light in the globe and saying, above the other children’s singing, “There’s a light in there! A light in there!” And he kept turning around and around.
I am past the point where I think it’s cute. This behavior is beginning to worry me.
After the second song, Will took off down the middle aisle, and many of the children followed him, to the dismay of his teachers, and delight of some of the audience. I was mortified.
In the late summer and early fall of 1991, Mary had been evaluated by the speech therapist and the social worker in our school district and placed in a per-primary impaired classroom. Sometimes when I thought about her, looked at her, I found myself thinking about how some movement demonstrated her deficits. When she spoke, I found myself listening for and evaluating the differences in her speech.
Then I began to evaluate Will. He turned the lights off and on at our house constantly. He opened and shut doors. We had to put spring loaded latches on all the doors in the house to keep him from opening and shutting them on his sister’s fingers. He was fascinated with fans.
I went to this Christmas program, and instead of thinking that many three and five year old children will pick their nose during Christmas programs, I evaluated it as a deficit, some special impairment.
After the Christmas break I did ask Mary’s teacher if we should have Will evaluated. She said that she was thinking the same thing. Will was tested by eight different evaluators, and found to have autistic like traits, although they were reluctant to diagnose him with autism at that time. He was also placed in a pre-primary classroom the week after his fourth birthday.
Not comparing is a difficult thing for both children and their parents. Thank you so much for being so honest about that!
Ann Kilter said:
I think when you start to notice differences, and they are confirmed by specialists, therapists, doctors, and teachers, you start to say to yourself…is it really true? And you look for signs to confirm their conclusions. We parents have so many conflicting thoughts running through our heads as we come to terms with the diagnosis. Guilt, denial, anger, etc. This is what I wrote in that journal 22 years ago. It was not for anyone else to read at the time. But I posted it here, because I want parents to know that they are not alone. That it is okay to have feelings of bewilderment, uncertainty, etc.
The differences are kind of cute until they start getting older. Then their peers notice too, and that makes it increasingly difficult to pretend that the differences don’t matter. Thank you for sharing this. My autistic son is now six and is struggling to “fit in” with the other kids at church and other activities. He still seems largely oblivious to it all, but to me as his mother it is painfully obvious. It’s so hard to not compare.
Ann Kilter said:
You are right. It is hard not to compare. I told myself it was wrong, not fair, not mature to compare. But how can you help it? Sometimes I was resentful, angry. Other times accepting. And we do need to be aware of the differences in order to help our children. In order to protect them and defend them. I wanted to make sure that Will and Mary were not punished unjustly when their behavior, if it were a normal kid, would have gotten them in trouble. But it is a loss. A loss of that typical childhood. And we must be on our guard.
Especially Made said:
It was heartbreaking for me when my son’s peers noticed and stopped reaching out to him. Even more heartbreaking when my son began to notice it as well.
Ann Kilter said:
It was heartbreaking for me as well. And as they grew up it continued. But I learned to take comfort in what they did have, and in the friendships they did develop. What character their friends displayed.
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Ann- Thank you for this post. It really got me to thinking, an entire morning of thinking and then a post about the thinking, inspired by you and the idea of where we were almost 22 years ago and where we are now and how different those places are and how very far we have come. I appreciate the inspiration! 🙂
Ann Kilter said:
Thank you. Glad to help. 🙂
Sometimes I can’t believe that it actually happened. That sounds crazy, considering everything that did happen. Now the kids are grown. It seems sorta foggy. But then I read through the journals, and remember the struggle, and look at the reports, the test scores, the evaluations, and IEP reports. And yes it did happen. What a different perspective we have now.